Tuesday, December 30, 2008

Be Careful What You Wish For

"Mom, the cat's out again!"

We have 2 phenomenal house cats... though I'm not sure one of them is aware of that (the house part). Tippy and Willow are our Lynx-point Siamese cats. They're the most wonderful, loving and interactive cats. They're great with all three of the kids -- never scratching or biting no matter what the offense -- and, they just adore my daughter... their official Mama. Unfortunately, Tippy has recently become an escape artist.

We also have a 13-year-old Chow Chow named Csiba who uses a remote controlled doggy door so that she never has to "hold it". Lately, Tippy (white tippy toes) has challenged herself with getting through that door. From a dead sleep, she goes running when she hears the remote click of the doggy door as Csiba makes her approach. Unfortunately, 13 years and a laid back attitude means Csiba's never quick to actually de-house (read: like de-plane only leaving a house). This poses two problems: [1] her meandering frequently results in the locking pegs resetting before she's made it through the door so the cat can follow by just nosing through the door that's ajar (that never sounds right), and [2] taking her time means Csiba often gets a feline escort as she de-houses.

Now, here's the thing... I'm pretty sure that Tippy doesn't actually WANT to be OUTSIDE. She just wants to get through the door. Once she's outside she goes into a feline panic complete with hissing fits and "Christmas Tree tail" (that's where the tail puffs up so much that it looks like a Christmas tree without ornaments). She immediately RUNS to the back sliders OR to the front door and scratches and meows loudly to be let back in the house. (Would that be called re-housing?) She never thinks beyond getting through that door AND since it only works one way -- she can't get back in once she's out because she doesn't have the magic collar remote -- she's stuck outside... where her actions deposited her.

So, here comes the happiness moral of my story today:

Be Careful What You Wish For! Don't aim for the door, don't go through the door, don't even peek through the door if you don't want to end up locked out on the other side of the door. That can mean a lot of different things to a lot of people. It means a lot of different things to me... all of them prophetic. In order to maintain my happiness quotient, I resolve to think through my actions such that I don't end up somewhere I don't want to be. Call me boring. Call me safe. Call me happy to be where I am.


THANK GOD Christmas is over! I love the holidays but they really do drain the life blood out of you... don't they? I enjoyed the days leading up to and the day of Christ's birth and even getting together with family for a few days afterwards... But, I'm glad to be done with it now. My tree officially remains intact until the day after New Year's Day but, in my head and heart, I've moved on to "regular" life. By the number of abandoned Christmas trees on the curb, I'd say I'm not alone in this sentiment.

[2] I'm knocking on my wooden desk right now.... I'm thankful my kids, my husband and I did not come down with any of the really nasty germs going around this Christmas season. I'm sorry that my Mom, Dad, nephews and a few others took a hit but, so far (hear that knocking?), we're all happy and mostly healthy (some congestion and other minor ailments... but, I'll take these over the other stuff making the rounds).

[3] I'm grateful for all the wonderful gifts people chose to bestow upon me and my family. I am awed by the beautiful gift of giving some folks have. And, I'm thankful to know so many people who truly give/gift from the heart with no strings attached.

[4] I'm glad I didn't gain any more weight for the holidays because that would just make my 2nd New Year's resolution that many pounds harder to achieve. (See my next post for more info on resolutions.)

[5] I'm thankful to have the time to sit down again and blog. I LOVE to write and miss it terribly when life's little pressures take that away from me. Read: I'm sorry I've been incommunicado and I'm very glad to be back!

Happy belated holidays and a peaceful and prosperous New Year from my keyboard to yours!


Some people are givers and some are takers. Amongst the givers, some do so to get something back. Others just give for the sake of giving without any strings or expectations. That's Marko. He's my friend of 16+ years and he's a no-strings-attached giver. I'm not sure whether I always knew this about him but it's become all-the-more-evident of late. With his philanthropic attitude, Marko has become one of my repetitive Angels. He's consistently "there" -- or should I say here -- for us in times of need and even when nothing is needed.... he's been there/here to give freely anyway.

Like others, we've been living mostly on one income since I left my job 6 years ago (I occasionally consult to fill in the gaps). For us, this well-thought-out and conscious decision put a pretty big financial strain on our family. Truth be known, I take most of the "blame" for that since I was the catalyst, quitting my high-paying job to stay home with the kids. It was necessary on so many levels for our entire family. At this point, and in hindsight, I'm sure my husband agrees it was the right thing for us to do. Still, living on 16% of our former income was not easy. That said, our finances have continuously improved as we knew they would (given our decisions) and we're doing all right these days. Truly.

However, when Christmas-time comes around, every body's belt gets tighter, bank accounts shrink, and everything seems more expensive. As we prepared for a very scaled-down season of giving, Marko and his motorcycle gang were gearing up on our behalf. The "Strength & Honor Motorcycle Club" is made up of active and retired police and firefighters who have dedicated their extra- and/or post-civil service activities to continue their philanthropic efforts by giving to others. Since my husband is "on the job" AND we have our very special, special-needs boys to care for, this don't-call-them-a-gang group of motorcyclists chose my family as their adopted-extended Christmas family this year. On December 12, with a truckload -- literally an SUV-full -- of gifts ranging from toys to clothes to monetary gift cards, Marko and his just-as-generous daughter, Jamie, made a 12-hour round-trip trek from Virginia to our front door. My children spent in excess of 2 hours excitedly opening early Christmas presents thanks to Marko and his non-gang.
My husband, children and I cannot even begin to thank Marko or his buddies for their generosity. What "Santa" gave my kids this year are wonderful memories and a lesson of giving that will live well beyond their youth. So, here's to http://strengthandhonormc.com/ and to Marko and Jamie for their incredible gift.... I am honored to know them and to call them my friends. Surely, they are the Angels Living Amongst Us!

Wednesday, December 24, 2008

Celebration of Life - Christmas '08

I hesitate to start my Christmas Letter on a dark note, but the recent Black Friday trampling death at our local Walmart Store affords us an incredible opportunity to focus on the meaning of Christmas. A man died because shoppers felt the Christmas gifts they needed to buy were more valuable than his life. Really? These people clearly missed the message in “Dr. Seuss’ The Grinch Who Stole Christmas”! Christmas is NOT about the THINGS you buy at Walmart or at any other store. Christmas is not about material wealth at all. Christmas is a day commemorating the birth and life of Jesus Christ. We are meant to celebrate His life and the good example he set for us by living our lives similarly. Giving of ourselves as He gave to us. Not trampling each other to death to buy the most, or the best, gifts. “The Little Drummer Boy” did not buy a drum for Jesus. Rather, he gave of himself by playing his drum for the baby Jesus… To honor His birth and celebrate His life. Christmas is just that… A celebration of Life! His life and the life He’s given us!

Well, we’ve had a lot of opportunities to celebrate His life and ours this year! While I’ve been busy chauffeuring my children to and from school, working on this old house (yes, it is still as yet unfinished) and speaking at some of the local colleges on behalf of people with Down syndrome, I have also taken the first steps in starting-up my own business. Even though this will certainly present additional challenges for me, I celebrate the opportunities that God continues to put in my path. I hope and pray I do each justice. Meanwhile, I celebrate the lives of my children and my husband each day by giving them my love and attention and by showering them with praise and affection. While I am far from perfect as a wife or mother, my children and husband are perfect opportunities for celebration.

My “old soul” is still teaching me invaluable life lessons… which I don’t always get right away. She made her First Holy Communion this year and, fully embracing the significance as a Christian, she chose to be rebaptised in the Spirit as well. Sometimes I forget that she is just a 7-year-old little girl. A fact that amazes me. While she continues to excel at school, she insists that she is not very good at math (a statement not supported by her grades). Sadly, her perceived struggle with this subject causes her great strife. In response, she joined the Mathletes club hoping it would make math more fun for her. That’s my beautiful girl a teaching me life’s lessons again! Celebrate even the things you don’t like much… like math!

Now 3 ½, "the boys" are nothing short of a daily celebration to everyone whose lives they touch… especially mine! They’re now enrolled in full-time preschool in an integrated classroom where half the children are typically developing and half are developmentally delayed (generally, speech-delayed like the boys). They receive integrated therapies there including speech, physical therapy and occupational therapy. And, they are making great progress and learning a lot about social routines. Truly, they celebrate going to school every day! “I go chool!” And, they are celebrated at school by their teachers, therapists and classmates. Everyone at the Marcus Avenue school knows them and loves them… especially one little girl named Olivia who meets us at the door and, holding hands, they walk to their shared classroom each morning… in celebration of their arrival.

We’ve been doing a lot of celebrating in honor of my husband this year too! He not only hit his 5 year anniversary with the police department (a significant milestone in this organization), but he was also promoted the very next day. Back on a day-tour schedule means he’s home to have dinner with us each night and has 2 and 3 days off, alternating weeks, so we see a lot more of him. We’ve been celebrating his presence and he’s been able to share in more of our daily celebrations too.

Unfortunately, we had the very sad opportunity this year to celebrate the short life of, my mother-in-law, a generous woman who passed far too quickly from this world and moved on to her next life in heaven. I know she has some good company, though, as we also bade farewell to our beloved dog, Isaiah. Though it was painful to say goodbye, their lives are well worth celebrating. And, as one life comes to an end, so begins another. We are celebrating the coming of a new member of our extended family my brother-in-law and his wife are expecting the birth of their first child in March.

Christmas is certainly a festive time of year. A time to celebrate and honor not only Jesus but also our loved ones, acquaintances, and strangers as well… for all they do to make our world a better place. I would like to take this opportunity to celebrate each and every one of you, my friends and family, with a heartfelt wish for good health, good humor and a very Merry Christmas and joyous New Year.

Sunday, December 21, 2008

My House!

Some people take great pride in their homes. The neatness, the style, the decor, etc. Believe it or not (the "not" is for those of you who have seen my home)... I do too! Of course, when you start in a hole it takes a lot more digging, breaking, fixing, designing, out-of-the-box thinking and money to get to the "showcase" home some folks are after. I, however, am not after the showcase home. And, though I'm occasionally embarrassed by the work-in-progress condition of my home, I'm after the warm and welcoming, lived-in home. Grandma Cookie calls my home's style "shabby chic". I understand the shabby part but... chic? Let's just say that's a nice way to say it's lived in and comfortable. Come in, sit down and relax! That is my style and ultimately, I hope, will be my home's style too.

This is the house-warming card we got from my family on the purchase of our "new" home (LOL). I keep it to remind me how far we've come. I know our half-finished, dilapidated-in-places, nearly 200-year-old Bayman's Cottage lacks pristine neatness (I fear it always will given it's age). This drives some folks nuts. I think it made my MIL a tad uncomfortable. To her, and all those folks who find themselves "doing time" in this prison, I apologize. Bear in mind, in the midst of raising our very special kids, we're not nearly done -- if there's any such thing -- fixing up "this old house". While a couple of closets would go a long way in getting closer to neat and clean, sometimes we make only baby steps in progress on the house but leaps and bounds of progress with our kids' development. Remember, our goal for our kids and our house is not to be just "for show".

Our family EI Social Worker once said, "Your home feels so warm and cozy!" That made my day! And I was doubly thrilled when a very formal, neatnik friend (the kind with cream-colored couches and matching carpeting in her own home) walked into my home with her young toddler, put him on the floor, kicked her shoes into the corner and sat cross-legged on my couch!

Ah... Now that's success!

Saturday, December 20, 2008


Prejudice: To prejudge; an opinion made without adequate basis; a judgement; a detriment to one's rights.

Because of my sky-is-the-limit attitude toward raising my boys, because the school they attend does not "specialize" in Down syndrome and because their "disability" is visible, I often find that other parents of children with special needs -- frequently other than Down syndrome -- chat openly with me about their experiences. Their children's disabilities may range from mild speech delay to appraxia to Autism -- anywhere and everywhere on the spectrum. In most cases, their child's disability is initially invisible to others. That is, you do not know that the child has a disability until or unless you interact with him/her. Many of these parents say they get "the look" as the notion that something is "wrong" with their child seeps into the other mothers' awareness and they begin to try and label the disability and determine the extent of affliction... without ever talking with the parent or interacting with the child.

My boys, on the other hand, wear their disability on their beautiful, smiling faces. Though they are mildly affected by their Down syndrome, everyone who sees them knows they have Down syndrome. Yes, I get "the look" too. But, I get it immediately... not after a parent has watched my child interact and has decided "something is wrong" with them via their behavior. As a matter of fact, I think if their disability was not visible, most people would not know there was anything "wrong" with my boys... except maybe a speech delay. Otherwise, my guys generally operate in the near-normal range of development. That is, they are at the low-end of the "typical" developmental curve or "borderline delayed"!

So, I want to talk about the prejudging that goes on when people first see my boys and recognize immediately that they have Down syndrome. You can almost here it "CLICK" in their brains... And, everything they think they know about Down syndrome, they've just applied to MY boys. Without a second glance and without ever interacting with them!

Even if you've been exposed to someone with Down syndrome -- unless it's recent exposure to a very young person -- the chances are your impression of what's possible in terms of development may be limited. Those who are born with Down syndrome today have a significantly different prognosis than those born just 15 years ago because of early intervention and mainstreamed treatment. Additionally, comparing my boys -- not knowing their specific state of health, treatments or innate abilities -- to anyone else with Down syndrome is inaccurate to say the least. There is a wide range of ability -- both physical and mental -- in people with Down syndrome. Applying your knowledge of one individual with Down syndrome to everyone else you meet with this genetic anomaly will invariably result in an inaccurate impression of the individual in front of you.

Prejudging a person with Down syndrome -- or any disability -- based on your experience or pre-existing knowledge is flawed thinking. Prejudging anyone based on what you think you know about them -- their ability or disability - is prejudice. Like each of us, my boys only get one chance to make a first impression. And, I've found it's sometimes hard for them to dig out of the hole some people put them in. What you see is not always what you get! Why not keep an open mind and let them WOW you with what they're able to do -- the way they've done with so many others -- instead of assuming you already know them and all they're capable of.


We've watched The Polar Express more than a few times these past few weeks. The kids love the whole train thing and I love the theme... BELIEVE!

I recently received an email with the subject line, "This will BLOW you away!". The content was a magic card trick by David Copperfield. In the 10 seconds I gave it my full attention -- that's 7 more seconds than most emails get these days -- the subject line was right... I was BLOWN away! Mr. Copperfield made my card disappear every time. OK, enough of that fun... I forwarded it to some friends and told them I was blown away and they should try it. Almost invariably, my friends came back snickering behind their keyboards at my foolishness and spouting the "trick" behind the trick. I won't give it away (just in case you receive it). But, for those 10 seconds it was a GREAT trick and I WANTED to believe that Mr. Copperfield worked his magic on me. I BELIEVED!

Recently, in three separate instances, the Old Soul and two of her playmates were told by unruly peers that Santa didn't exist. The other two children ran to ask their Moms for "the truth". I don't know exactly how those other conversations went but I do know that my daughter told me about what happened and said that other child was flat out wrong! There is a Santa Claus and he does give out presents. She suspended her belief in Santa by accepting palpable, if not occasionally improbable, explanations of information that contradicts a fantasy she WANTS to continue to believe in (for now). She's just like her Mom!

Believing in harmless legends makes me happier. If my daughter asked me for "the truth" (she didn't in this case because she already knew it), I would tell her without doubt that Santa Claus absolutely does exist and will deliver presents on Christmas day to all who believe... and even to some who don't. I am not wrong! Santa Claus comes in many forms. People are giving gifts all over the world on Christmas Day! I've just shifted the information I deliver to fit the facts I know. I'm happy... and so are my children. This holiday season... take the time to BELIEVE!

Friday, December 19, 2008


"A day late and a dollar short"... isn't that the saying?

[1] Fortunately, we're not a dollar short these days despite the tough economic times. We've got enough dollars to pay the bills and feed the family with a little leftover for dinner out at Wendy's and some Christmas presents. Gotta be thankful for THAT!

[2] Let it Snow! Let it Snow! Let it Snow! It's SNOWING! And, I LOVE the snow! I hope it stays for the weekend so the kids and I can get out there and build some competition-grade snow sculptures. Last year it was a lawn-sized stegosaurus. Wonder what Olivia will have us make this year. I'm so happy and thankful for the snow... on a Friday so I don't have to drive the kids to school in it! (Double happiness bonus! Thinking about snow sculptures reminds me of the good old days and our blue-ribbon sand sculptures at Crane Beach, Ipswich, MA.)

[3] I wish I had a fireplace in my home so I could light a log, curl up with a hot cocoa and watch a good movie... Unfortunately, I don't! But, 2 out of 3 ain't bad! And, I'm mighty thankful for THAT much!

[4] Ever hear of Blue Cottage Crusades, Ltd.? (Maybe it should be called Beat-up, Old Blue Cottage Crusades - LOL) That's the name of my soon-to-be internet business. Haven't actually opened the cyber-doors but the name is now officially registered to ME by the State of NY and the Federal Government! Scary but COOL! I'm just thankful for the opportunity to try my hand at a new business venture. I'll keep you all posted. I'm sure it'll be the topic of much happiness (and heartache but that's not what this blog is about).

[5] I'm soooo thankful that I finally got my Christmas letter written and 90% of my Christmas cards addressed and stamped. Now, I just have to drop them in the mailbox. If you know me, you're probably thinking that could take 6 months! But not this year! Most of you should expect to see them before Christmas. A few (overseas) might take a bit longer... but they're coming! For those not yet on my list: Have a happy and healthy Holiday Season and a prosperous New Year!

Monday, December 15, 2008

Pain in People With Down Syndrome

I have 2 children with Down syndrome. By now, most of you know that. I also speak on behalf of people with Down syndrome and other disabilities... educating society to accept them and treat them as individuals, NOT as their diagnosis. You probably know that too if you've been reading my blog.

Recently, some medical articles have been circulating amongst some of my friends whose children also have Down syndrome. These articles relate research undertaken to show that "people with Down syndrome experience pain but they express it slowly and not as precisely as the general population." That is, they have delayed and non-specific sensations relating to pain. Or, more specifically, people with Down syndrome appear to feel less pain but actually feel delayed pain and cannot localize or express the pain efficiently. This results in less intervention for pain management on behalf of the pain sufferer. They suffer in silence. The studies were done with 26 individuals with Down syndrome and 75 "healthy" volunteers. Cold stimuli were applied to the wrist and temple, and hands, face and mouth of study participants. Those with Down syndrome reacted in apx. 29 seconds and had difficulty identifying specifically where the cold stimulus was applied, while those without Down syndrome reacted in apx. 20 seconds and could identify the locale of the cold stimulus. As such, medical professionals and parents/caretakers of patients with Down syndrome should be aware that specific pain management techniques may need to be administered in situations where pain would be expected (i.e. post-surgery). Pain management should be addressed despite such patient's lack of, lesser or non-specific expression of pain. Information that should be passed on to the parents and caretakers of and Pediatricians treating children with Down syndrome.

Now, I'd like to make a few personal points regarding these articles:

First, as the parent of 2 children with Down syndrome, I take issue with the use of the word "healthy" when it's used to describe the non-DS research participants... insinuating the study participants with Down syndrome are inherently un-healthy. Perhaps it's just a poor choice of words but, I take issue with the notion that people with Down syndrome are not "healthy". An individual with DS can be as healthy as those without DS despite their extra chromosome. Healthy, according to Webster, means "enjoying sound overall condition of the body". Let me assure you, my boys are healthy and they have Down syndrome.

Second, these studies raise enough questions about the generalized conclusion that additional research with this population is definitely warranted. For instance, the studies used 26 individuals with Down syndrome and 75 without DS. Were the 26 individuals with Down syndrome "typical" of this special population? In a "typical" population of 26 people with Down syndrome, 80% or 21 of those individuals, would have had the heart defects that typically accompany a diagnosis of Down syndrome. And, additional medical conditions may occur -- but are not necessary -- amongst people with Down syndrome as well. If the research group studied was statistically "typical", is a population of 5 without heart defects a sufficient number to draw generalized conclusions against? And, were these results different from the 21 with heart defects? What about representation of the other medical conditions? For that matter, are 26 people with Down syndrome truly representative of the DS population?

Additionally, were there differences in response between those who are more affected by Down syndrome cognitively versus those less affected? Is the result a function of the physical affects of Down syndrome -- delayed pain signal relay -- and are there differences between more and less physically affected individuals? Or, are the results related to high or low mental acuity -- recognition of the pain signal -- in people with Down syndrome? And, is additional research warranted comparing people with similarly affected levels of mental acuity with and without Down syndrome (individuals with MR vs. DS who test at similar IQ levels)? Finally, is cold stimuli really received the same as pain?

Third, as I read these articles with interest, I found that the conclusions did not necessarily apply to my boys. When Brian and Michael taste something hot -- stimulus to the mouth, as in the study -- they react IMMEDIATELY by saying "OW, HOT!" quickly opening their mouths and spitting out the too-hot food... just like you or I would do. They do the same thing when they step into a too-hot bath... immediately jumping out and saying, "Hot". When they go to the MD and get a shot or two, they react immediately and stop reacting when the shooting is done. Consistently, my boys have tugged on or tapped their ears saying, "ouch" indicating an ear infection -- ultimately diagnosed by the MD. Headaches, although they don't call it that, are indicated by holding their heads by their temples and saying, "ouch" and sinus pain is indicated similarly but covering their eyes or rubbing beside their noses/beneath the eyes. Further, when either boy gets his finger caught in the cabinet door, accidentally stepped on or injured in some other way, their reaction is also immediate and specific. They say, "Ouch", and come crying to Mommy to kiss the finger that was hurt. Change the location of the painful stimulus and they will react by telling me what part of their body they need kissed -- head, toe, eye, arm, nose, finger, back, face... you name it, they'll identify it specifically. I know that they know exactly where they got hurt too because if I kiss the "wrong spot" they continue to point at the specific injured spot (as evidenced by the red mark) until I get it right. And, they do all of this absolutely no slower than my daughter without Down syndrome does.

Please note that none of my points outright negate the conclusion of these studies. And know that there have been plenty of times when I thought maybe the boys weren't feeling so well or were limping but they didn't or couldn't express illness or injury to me. I assumed it was a language barrier versus a pain-interpretation barrier. As such, I have occasionally treated them with Tylenol or other OTC medications for general malaise or brought them to the Pediatrician based on their behavior (in the absence of fever or other outright signs of illness or injury).

Since I can't think of an ethical way to test specific pain or the tolerance of pain in humans, I'll never know whether my boys feel pain the same way I do. As such, these results are useful to keep in mind when treating my boys, or anyone with Down syndrome, for pain conditions. However, we must also acknowledge that these generalized results may not necessarily generalize to everyone in the Down syndrome population. We certainly don't treat everyone diagnosed with cancer the same way. Treatment depends on their type of cancer, location of the cancer, age and general health of the individual. Each case is handled individually. Likewise, INDIVIDUALS WITH DOWN SYNDROME SHOULD BE TREATED AS INDIVIDUALS WITH SPECIAL CONSIDERATION FOR THEIR SPECIFIC DIAGNOSIS AND IT'S SPECIFIC MANIFESTATION. It is how I would want to be treated.

Saturday, December 13, 2008


I must say I'm thankful to be so busy with so many good things this Christmas season that my blogging has fallen by the wayside! Still, that's not a good reason to be consistently late with my posts. So, I'll do my best to make up this week's missing posts. Meanwhile, though I usually ponder my Thankful Thursday posts -- a great opportunity to boost my mood -- I'm going to run through these pretty quickly tonight. Here goes:

[1] I'm thankful for the beautiful sunset that's happening right before my very eyes as I sit here typing this.

[2] I'm thankful for the REAL Santa Claus down at The Dee's Nursery. Despite the kids behind us in line insisting to Olivia that he was fake "because the real one has a pure white beard not that faded one he's wearing". I corrected the young girl behind us and ensured her that, in fact, not only was it a real beard but he most certainly is the real Santa... WHICH, I said, she would see more clearly when it was her turn to go up and talk with him. Olivia smiled. She wasn't buying that girl's rant anyway.

[3] I'm also thankful that FINALLY that little girl's father stepped up and told her to keep quiet.

[4] I'm thankful for my husband. He is a kind, gentle and hardworking man who supports and encourages my parenting style, creative outlets and employment (or unemployment) endeavors. His calm acceptance helps make this phenomenal life we're living possible.

[5] BUT, MOST OF ALL, TODAY: I'm particularly thankful for my friend of 17 years, Marko, and his VA motorcycle group, http://strengthandhonormc.com/ who adopted my family for Christmas this year. Marko and his daughter, Jamie, drove more than 12 hours round trip from VA to Long Island to play Santa to my children on behalf of their group. These amazingly generous people brought my children a phenomenal array of gifts -- toys, tools, cars, dolls, clothing, boots and more -- a Christmas we could never have afforded to give them in these tough economic times. Even my husband and I received an unexpected and more than generous gift... beyond this incredible act itself. I'm so thankful and honored to have been chosen and to call these people my friends! God bless every one of you! (Pics and More on this later!)

Stop and think thankful tonight. Even if you only have a second, it takes just a moment to feel happy about the good things happening in your life.

Creating Happy Childhood Memories For My Children (And Me!)

When I was about 10 years old I was invited to my eldest cousin's wedding. Prior to that, my siblings and I had been left home with Grandma Alice while my parents attended all the "big people" events without children. Don't get me wrong, we had lots of fun with Grandma Alice.... But, I will never forget attending that wedding. I remember the dress I wore. I remember the place -- The historic Chester Town Hall. I remember the tables of food set up around the perimeter of the dance floor. And, watching the adults dance from the balcony. That was my coming-of-age wedding.

Fast forward 27 years: I found myself watching another wedding from a completely different perspective. I remember standing to one side of the dance floor. I remember the dress I was wearing and the feeling of my husband's hand holding mine. I was watching some 20 children making a collective wish for the new bride and groom and blowing out the candles on an elegant wedding cake. It was my wedding cake and my wedding! And, we were creating happy childhood memories not just for ourselves but for all those children. My new husband and I made a conscious decision to invite all of our adult guests along and all of their children (no age restrictions). I wanted to give all of our little cousins and friend's children their coming-of-age-wedding memory. We invited them to this big event in our life, not so that they would remember us -- though I can still picture cousin Barney and his wife, Theresa, cutting their wedding cake together in that great hall -- but rather to remember their first wedding in a fun and fond way. We catered to the 45 children in attendance, giving them their own dinner- and dessert-buffets as well as an important role in our wedding... cutting the cake (along with the wish making). I think they all had fun. I hope they all have a great memory of it.

These days, there's one thing sure to bring a smile to my face... the recollection of a fond and happy childhood memory. Such memories pop up seemingly out of nowhere though, more likely, they are triggered by some glimpse of the past. My husband and I do a lot of things with the intention of creating fun for now and fond childhood memories for later. The trampoline in the basement. The amazing tree house in the backyard. Camping with our cousins. And, more. While I'm not sure all of our efforts will be as fondly remembered as we hope, I know that at least some of them will take hold and provide my old soul and the boys some very warm and fuzzy feelings of love and laughter later on in their lives. I know there are times we create some bad memories for our kids given the occasionally crazy life that we're living, but creating a lifetime of happy memories for my children is a conscious decision I make every day of their lives.

Today, we're going to see Santa Claus at http://www.deesnursery.com/. Each of my children will also get to select one special new ornament for our Christmas tree... one of our budding Christmas traditions. Then, we'll come home and decorate the tree together -- each child ceremoniously placing their special ornament on the tree. Just thinking about decorating the tree with my kids is bringing back warm memories of Christmas' past where my siblings and I each got a handful of tinsel and the chance to use own method of applying it -- strand-by-strand, tossing or clumping -- to our family Christmas tree.

Make some happy childhood memories for your kids today!

Tuesday, December 9, 2008

My Phenomenal Genetic Accident(s)

Obscured by a conversation about his own genetic counseling, one half of a concerned couple recently asked me about Brian's and Michael's diagnoses and whether there was genetic "blame" to be assigned. Was someone -- my husband or I -- carrying a predisposition toward Down syndrome that could be passed on or might be present in other family members? Clearly worried about his own genetics, I informed my friend that Down syndrome is a genetic mistake where 1 chromosome -- the 21st -- over duplicates and the rest of the cells just continue to replicate the mistake. The questioning continued, seemingly trying to find a reason for this "black mark on our genetic chart!" I emphasized the mistake scenario again and again but he could not grasp the idea of chance in pregnancy..... Imagine that!

On another occasion, I was part of a discussion regarding the propensity to conceive identical twins. Being the mother of identical twins and having done much research in this area, I explained that the occurrence of identical twins is a "freak of nature". A genetic accident where the egg splits in two to create two identical babies. Some of my fellow conversationalists just could not grasp the idea that my identical twins were not the responsibility of special genetic donations from my husband's distant, twice-removed, relative-by-marriage who had identical twins... [we think]. Hell, there have been 5 sets of identical twins conceived in the past 70+ years in my extended family. That certainly proves the notion that this is a hereditary phenomenon. Doesn't it? The concept that the occurrence of identical twins is governed by happenstance seemed unacceptable to many.

These two separate conversations fascinated me in their similarities. Yet they had diametrically opposite goals. The assignment of blame for a random genetic occurrence that was perceived as "bad" (read: Down syndrome) versus the desire to claim responsibility for a random genetic occurrence that was perceived as "good" (read: identical twins) was mind boggling. On the blog, http://happiness-project.com/, the idea of life's "True Rules" suggests that some things hold true in life no matter what. Surely, the saying, "Sh#*! happens" is one of those true rules. Some things just happen. Without blame. Without responsibility. Without reason.

Well, thank God for happenstance. For "freak-of-nature" occurrences. For genetic mistakes. I am so LUCKY to have been "chosen".... Because Brian and Michael are the most Phenomenal Genetic Accidents that have ever happened to me.

Friday, December 5, 2008


Late again.... But, I'm just as thankful today as I was yesterday:

[1] I'm thankful that I have more than enough STUFF to keep me busy while my children are in school. Boredom is something I don't handle well.

[2] Even though I'm feeling pretty sick right now, I'm thankful that it's JUST a cold and not the flu... thanks to my flu shot.

[3] I'm thankful for the business opportunities that God continues to send my way. I hope I do this latest opportunity justice. (I know that's a bit cryptic but, bear with me, it's a work in progress.)

[4] I'm grateful for the challenges I face each day. They keep me on a learning track, feed my creativity and boost my feelings of self worth. Without a little challenge I wouldn't be taken to task in all these ways.

[5] I LOVE these holidays. So, I'm thankful that we're in the Christmas season. The brightly colored lights on the houses, Christmas specials on tv, Christmas cards in the mailbox, and on-going holiday festivities always cheer me.


Staying with the theme of my last post -- our trip to Hershey Park, PA -- I'd like to acknowledge a real-life angel that, selflessly, helped us out in our time of need. Excuse my lack of information but I met this man under duress and so I don't recall his name but I do know how generous he was with his time and knowledge.

Stranded with our broken down car and 3 hungry/tired kids in the parking lot at Hershey Park, long after the last "tail-gater" closed their doors and pulled away, my husband and I wondered what to do next. We had each already taken the long walk over to the "security" shed where we were assured someone would come help. But, we'd been waiting 2 hours already and there was no one left in sight. Out of nowhere, a large SUV with NY plates appeared before us and a man got out. He was from Long Island (like us). He had a wife and 2 hungry/tired children in his car and was about to be on his way home. Like us (only with one less child). He also happened to be the head of the Nassau County Vehicle Repair Center for UPS. Despite the late hour and obvious inconvenience, this Angel Amongst Us took the time to get under our hood, determine the full scope of damage, call his repair center for part name, number and availability (factory made vs. car-manufacturer made), gave the pertinent information to my husband and, with some instructions, assured him it was an inexpensive, do-it-yourself repair.

Armed with this information, we finally got permission from a Hershey Park security officer to leave the car there until the next morning. We were rescued by our friends Tammy and Mike (another pair of Angels Amongst Us) and spent the night in a seedy hotel with very warm and comfortable beds! And, for the low cost of the part and a couple of hours of lay-mechanics' labor, Tim and Mike repaired the vehicle and got us on our way.

Many thanks to the head of the Nassau County UPS Vehicle Repair Center for taking the time and making an effort to help us. Once again, this individual restored my faith in the kindness and generosity of mankind.

Wednesday, December 3, 2008

"Lucky" Is An Attitude

At the end of an absolutely wonderful and much-needed weekend getaway to Hershey Park, Pennsylvania, we bade farewell to our friends at the exit gate and weaved our way through the crowded parking lot to our car. We had decided to "honor thy education" and make the 4-hour drive home on Sunday night to ensure our children would be in attendance at school on Monday morning... rather than staying over with our friends and driving home the next day without traffic. We packed our 3 tired and hungry children into the minivan, and, in the midst of the "let's stop for a quick slice of pizza before the kids fall asleep" conversation, we climbed aboard ourselves. Key in the ignition, turn.... CRACK, CLANK, CRASH. Though we hadn't moved an inch it sounded as though we'd run over a bottle. So, after the requisite, "What was that?" my husband and I climbed out of the vehicle and, each on our respective sides, peered underneath the car. To our surprise, a big hunk of metal thingy (my definition) was sitting just beneath the passenger side of the car. Tim called it a "belt tensioner" feeling rather auto-savvy since they'd just had one replaced in one of the cars at work. Long story, not short, but shorter... Sunday 6pm is not a good time to break down in Hershey, PA. No triple A, not an auto part store open within 50 miles and darkness descending. With some difficulty, we finally got permission from the park security staff to abandon the car there overnight without the fear of towing, promising to retrieve it in the morning. A quick call to our friends and they returned from their campsite to retrieve my weary family. Wendy's drive-through for dinner, a new hotel room and we were all sound asleep by 10pm. My kids would not be in school on Monday after all!

Bright and early the next morning, Tim and our friend, Mike, bought the part and fixed the car with just a little difficulty and some telephone assistance from Albert, our mechanic back home on Long Island at Felix-Albert's Garage. By 12:00 noon, we were on our way. 18 hours late. We stopped for the "quick slice of pizza before the kids fall asleep" that we'd talked about the night before and began our 4-hour journey home. But, we only got as far as the main highway ramp when the "low oil" light flashed on the dashboard. Tim informed me that he'd previously had the feeling there was a slow oil leak and that he'd have Alex look at it when we got home. For now, he pulled into a gas station, bought some oil, refilled the receptacle, the light went off and we were on our way again. And, our friends were absolutely right. There is much less traffic midday on Monday than on Sunday... So, besides the unfortunate deer carcass Olivia saw on the side of the roadway, the rest of our trip home was uneventful.

However, Tuesday morning's ride to school was NOT uneventful. Our usual morning rush landed me 15 minutes behind schedule. I dropped Olivia off at school and headed toward Sunrise Highway to get the boys to school. At the first traffic light that caught me, I noticed smoke seeping out from under my hood. Not a lot, but because of the preceding days' excitement, I cancelled the left turn onto the highway and went right instead. Right to my mechanic, that is. As I got out of the car and began walking toward Alex's office I heard someone yell, "Shut that car off QUICK... You're over heating!!!" One of the mechanics came running out to my car and, with the boys still in the vehicle, he pulled the keys out of the ignition and popped the hood. Alex followed, welcoming me with a smile and, "You made it home in one piece!" He joined his mechanic under the hood, both men shaking their heads. Alex looked at me and said, "Boy are you LUCKY!"

"NOT the word I would have used just now, Alex!"

"Well, you've blown the head gasket. You're lucky this didn't happen on your drive home from Pennsylvania, or the engine would have seized." I finished that sentence in my head... "miles from home, on a Sunday night, in the middle of nowhere, with 3 sleeping children." Suddenly, LUCKY is just exactly how I felt! As it turns out, the first breakdown was a freak and had absolutely nothing to do with the second. But, the second, coming on the tail of the first, put me in the mindset that the car was in a fragile, gotta-get-it-checked-out state and certainly made me respond more quickly. And, the second was such a HUGE problem that if I'd driven another 5 minutes, our engine would have been a useless hunk of metal under the hood. OK, I'm LUCKY!

Not LUCKY that the car broke down. Just LUCKY that it broke down when it did, where it did and that I got it to the mechanics on time. I'm also LUCKY to have gotten an extra day added on to our vacation. And, most of all, I'm LUCKY to have such great friends (thanks Tammy and Mike)!

Olivia said, "Mommy, nothing bad ever happens to us!" And, she's right! You see, "LUCKY" really is a matter of perspective... and attitude!

Sunday, November 30, 2008

Child Development: What Do You Do?

Now that I've filled up your screen with tales of my efforts to foster my children's development. I'd LOVE to hear your ideas and activities. I'm always looking for new ways to help my kids. What unique activities do you do to help foster your child's physical, mental and intellectual development? Post a comment and share your ideas to benefit kids everywhere (or at least the kids at my house). Thanks, in advance, for your input.

Saturday, November 29, 2008

DS & Development: What I Did To Help

When you walk into our home you might think we're a bit over the top when it comes to our kids. That's a nice way of saying that we're toy clutterers.... which may be true. Yes, our home is a shrine to our children. In part, that means there are lots of toys around. You can pretty much find a dinosaur, matchbox car or ball in every room, every nook and every corner of our home. But, mostly, this is about being 100% dedicated to our children's development. You might say it started with Olivia's birth. But, as a matter of fact, it actually started way before that when I experienced really cool things in my friend's and neighbors' homes as I was growing up. The McMahons had a removable slide on their stairs and parallel bars in their backyard. The Gunther's flooded their backyard every year to double as an ice skating rink for the whole neighborhood. And, The Goods had a swing in their great room and a gradually-angled ladder, instead of stairs, leading to their balcony (they had the main stairs on the other side of the house). And, PB&J Otters had a turbo slide from their bedroom right into the kitchen breakfast nook. Yes, I take my ideas from everywhere and anywhere. Some we've implemented, some are still projects in waiting and some will never be implemented because I can't convince my husband that they're not too far-out... like the turbo slide from our balcony to our great room. How about a fireman's pole? No?

Enter Brian and Michael, diagnosed with Down syndrome at birth. We were told to expect their development to be be slower than "typical" children. So, we redoubled our efforts to support their development.

Most children take their first steps between 9 and 18 months. The average age for this milestone in children with Down syndrome is somewhere between 2 and 3 years old (24-36 mos). Jill, the boys' Physical Therapist, used a half rubber ball mounted on a heavy plastic platform to simulate a soft surface where, she told us, balancing helps stimulate the muscles used in standing and walking. She suggested we help Brian and Michael by standing them on our king-sized mattress... being very careful that they don't fall off. Definitely doable, but not as easy a task as it sounds. In thinking about the dynamic affects of a dynamic surface, we went out and purchased an 8 foot round trampoline, complete with safety net, and assembled it on our indoor balcony. Instantly, Brian and Michael [and Olivia] had a wonderful and safe play space with a dynamic surface that promoted standing and walking. They could be in there alone, with each other, with me or with the therapist... consistently using those otherwise underutilized standing and walking muscles. Brian and Michael took their first steps at 14 mos. They might have done so without the trampoline... but I believe it helped. We also believe that this "tool" has improved their balance overall and hastened their ability to jump and run as well.

On another occasion, Corinne, the boys' Occupational Therapist, noticed a characteristic of the boys' grasp that generally translated to a weakness in the upper body/shoulder region. I hearkened back to my gym days and recalled the machines and movements that targeted the muscle groups in my shoulders, upper back, neck and arms. Then, I thought about play situations where a child might use those muscles. With my husband's permission, I purchased some hardware from "Ace, The Hardware Place" and installed heavy-duty hooks into the main "microlam" beam in our great room/kitchen ceiling. (Note: I chose our main micro laminated beam because it is 2" x 12", has extra support and is stronger than a standard wooden beam.) I brought the trapeze bar/rings combination toy in from the kid's outdoor swing set and hung it from the hooks. The boys pass these rings hundreds of times a day, being right smack in the middle of our living space. And, every time they pass, they grab on, pull themselves up, swing back and forth, spin and perform other gravity-defying acrobatic moves. Within 2 weeks, the weakness our OT had seen was gone. She was so amazed at the boys' significantly increased hand and arm strength that she recommended this highly effective indoor apparatus to the parents of other children she worked with. She was surprised when not even one other family chose to implement the idea. Later, when my sister suggested we move the rings to the basement ceiling so that we could rearrange the furniture in our great room to be more aesthetically pleasing, we declined... Knowing that part of the effectiveness of the rings/trapeze is it's accessibility and consistent use.

Recently, the boys' preschool OT said writing on a vertical surface, such as an easel, is good for handwriting development. Well, we've already addressed this by integrating vertical writing surfaces into the design of our home. Our hallway/entryway has 3 large, framed squares that resemble wainscoting, painted in deep green chalkboard paint over a heavy coat of magnetic paint. In a nearby bottom drawer (accessible to the children) are large- and small-grip, round- and pencil-shaped colored chalks as well as various buckets of magnetic shapes, letters, jungle animals and dinosaurs, all for use with the chalk/magnetic boards. And, as an added bonus, to promote their healthy self esteem, 3 framed bulletin boards top the chalk/magnetic boards where we proudly display each child's most recent artwork. With much fanfare, I change out this breathtaking and public display of their creativity on a regular basis to help them take ownership and feel proud.

To further strengthen their core and abdominal muscles, we can change out the rings/trapeze bar with a disc swing. Holding on tightly to the center rope strengthens their bodies' core muscles and the vertical positioning of their grip on the rope (vs. the horizontal position used for the rings and trapeze bar) is a good OT exercise, working different muscles in their hands and arms that are useful for writing. And, keeping their legs tightly wrapped around the disc so they don't slide off presents more opportunities for building stronger hips and leg muscles.

Additionally, we have 2 different, interchangeable swings that hang from the exposed rafters in the children's bedrooms -- the standard child's bucket swing and an oval-shaped hammock swing we received as a wedding gift. Either swing can help address any feet-off-the-ground/swinging sensory issues my kids might develop (they don't have any now) and the latter is more than big enough and great for rocking a restless child (or parent) to sleep. We have a slide on each floor of the house and encourage not only the standard use -- climb up and slide down -- but also walking up the angled slide surface which is a wonderful leg strengthening exercise (picture severely up-hill walking on the treadmill). To assist with one-foot standing, I pull the vacuum cord out of the canister and have the boys stand on the button to retract it. Then make them switch feet. Currently we also have secured a 6' climbing wall to the top of a 4' tall fence in our driveway. The boys climb up and down after school nearly every day on their way from the car to the house. And, instead of carrying them or plain old walking into or out of their school, we do the "up-down walk" where they take one step up on the curb and the other down in the street (obviously, I'm on the outside keeping them safe). Doing so on the way in and out of school, makes them use both legs/hips equally and helps strengthen their weaker sides. All of these things make exercise and therapy more fun... so they love doing it.

Our most amazing effort yet, (still a work-in-progress) is the backyard tree house on a 12' x 16' platform. I designed and my husband is building this incredible structure. 7' off the ground, when completed the house will have 2 split doors, 2 swing-out plexiglas windows and a sitting/sleeping bench (with twin trundle bed beneath) along with a fold-from-the-wall work table. There's a standard-rise stairway (so adults can participate) that's only 24" wide with ever-so-slightly lower-than-average rails so the boys can practice going up and down stairs holding onto either/both side(s). The stairs turn at the top and again halfway down (1-step down to the first landing, turn, 4 steps to the next landing, turn, and 4 steps to the ground) so no one can fall down a flight of stairs. There is a 14' scoop-style wave slide and there will be a 5' x 12' large-gauge climbing net set at the same angle as the slide so no one can "fall" (rather they'll roll) down to the ground. These are each set on a separate railed platform that is a step down from the main platform, again making sure that no one accidentally ends up in this area. And, finally, there's a locked gate that will access a 70' zip cord complete with a handle and sitting ball that will end on a cushioned platform very near our back door. Heaven on earth for our kids... And, they don't even know they're doing PT and OT while they play.

I can go on with other unique implementations and activities but you get the idea. I am driven to think outside the box when it comes to fostering my children's development. My boys are now 3 1/2 years old and are in the borderline-delayed range for their physical and mental development. It's possible they would have developed just as well had we not done all these things... But, I'm certainly not willing to take that chance. Not now nor going forward. I will continue to do everything and anything I can to help foster my children's development. The boys' therapists are thankful that we're such involved and out-of-the-box thinkers when it comes to helping them and our children. And, at the very least, when my children are all grown, I will be able to say I did everything I could to help them become the awesome and capable people I am sure they will be.

Friday, November 28, 2008


Last night, on the way home from a wonderful Thanksgiving with my family, my elderly father reached into his pocket and pulled out a very small, stuffed panda bear. An old Christmas tree ornament based on the shredded loop of string at the top of it's head. In the darkness of the car he handed the bear to me and said, "I found this at home and thought the kids might like it." I immediately gave it to Olivia who, I knew, would care and play appropriately with it. We bid our fond goodbye's to Grandpa and cruised on home with thoughts of our family and the fun we'd had throughout the day. It had certainly been a great day!

When we got home, in the light of our kitchen, Olivia had the opportunity to examine the gift Grandpa had given her. The panda bear, a mere 3" tall, was patchy with yellowed fur. Some of the black had worn away too and his beaded eyes were gone. A beat up old thing... probably left over from my childhood many [many] years ago. Olivia looked at the bear with sadness and kissed it gently. She said, "Mommy, this bear is losing his fur. Maybe we can sew on some new threads to fill it in." I looked at the bear, thinking to myself that most of us would have thrown this beat up old thing in the garbage, and told her I thought the bear's fur was probably too far gone to fix. She took the bear back from me, kissed it again and, teary-eyed, asked where Grandpa had gotten the bear. I quietly told her, "Oh Olivia. This bear has probably been sitting under some old pile of newspapers in Grandpa's basement, rotting for years and years since Mommy was a kid". Big giant tears rolled down her face. Now, you might be thinking, as I was, though only briefly, that Olivia was not happy with the bear because it was old and decrepit. "Mommy" she whispered, "this bear has had no one to play with it all those years? He's been all alone with no kid to love it?" She began to cry in earnest. My eyes filled with tears too and I told her, "Well, now he has you. That's why Grandpa gave him to you. He knew you would take care of him and love him." She half smiled -- one of those sad but brave smiles -- through her tears.

She went to the drawer and pulled out some Sharpie markers and asked me to color in the fur where the black and yellowed fur had worn away. She suggested that the next time we come across two small white pearls we could sew them on for his eyes. Then, she ran to the playroom and came back with a large, stuffed, mechanical panda bear, placed the little bear in the bigger bear's arms and said, "Now he has a Mommy." I suggested that perhaps the bears could have a special place near her bed since the little one had gone so long alone and she brought him and his new Mommy upstairs and placed them at the head of her bed where they spent the night.

This morning, those bears sat at the breakfast table as she ate. My little Angel had been heartsick with the thought that a toy (to her, a tiny baby) had gone any length of time without a friend and without a Mommy. She hadn't cared that the bear was old and beat up at all. She only cared about him! The bear! She only cared about his feelings and his lonliness. I'm sure she'll see to it that this little bear, which she named Saint Patch (short for Patrick and representative of his patchy fur), will never be alone again.

Sometimes the Angel Amongst Us is sitting right beside us unrecognized. Sometimes, all you have to do is listen to their words and appreciate the thought behind their actions.

Thursday, November 27, 2008


Today, being Thanksgiving Day, is a day we should be especially mindful of what we're thankful for. Being thankful helps me to focus on all the good things in my life instead of attending to the things that, I think, may not be going so well at this moment. I recently read an apropos quote from Helen Keller, I believe. The gist of her statement was that if we're going to compare our lives to others, we should not compare to those few who seem to have everything but to the masses who have less. In doing so, we will be more satisfied with what we do have and less focused on what we do not have. I have always found that I fall short in side-by-side comparisons. However, when I'm Thinking Thankful and comparing myself to the masses (not the millionaire next door), I feel as though I'm on top of the world. Taking Ms. Keller's advice, here are just a few of the things that I'm thankful for this cold Thanksgiving Day:

[1] I'm thankful for all the young men and women of our armed forces. Because of their selfless career/life choices, they are spending their Thanksgiving in tents halfway around the world, that I may spend mine with my family enjoying the freedoms they work so hard to protect.

[2] I'm thankful to have a home... a [solid] roof over my head and 4 [insulated] walls to keep the wind and cold at bay. Sure, it'd be great if my heat worked... Still, I am beyond thankful to be inside this house with sweaters and blankets to keep me and my family warm rather than be outside where it is infinitely colder, lying in a box on the sidewalk with no protection from the elements or in a shelter with no privacy or personal belongings.

[3] I'm thankful for my husband's job... that it pays him well enough to put food aplenty on our table at every meal, every day of the year. God knows there are others who will eat nothing today. I'm glad to be able to give a few cans of vegetables or a couple of bags of stuffing to help those less fortunate... I wish I could, and hope to, do more for those with less.

[4] I'm thankful for a caring and loving family. I love that I have a good relationship with my parents and all my siblings. We are fortunate to be so close. And, I'm thankful that this closeness extends all the way out to my 3rd and soon to be 4th cousins. Truly, we are so blessed.

[5] I'm thankful for the opportunities that God presents to me each day -- to laugh, to love, to learn, to believe, to live life to the fullest -- no matter what the outcome. And, I'm thankful that He gave me a "calculated risk" personality to enjoy all these things without destroying my faith, myself, my family, or our livelihood.

[6] I'm thankful for today. Just the way it is, just the way I am. I am here... Thank God!

Wednesday, November 26, 2008

Learn Something New [& Laugh] Every Day!

We've all heard the saying, "Learn something new everyday!" As I understand it, it's meant to be a road to -- or, at least, a method of gaining -- happiness and self-satisfaction. I recently found that learning something new by accident can be a lot more satisfying and occasionally downright hilarious due to the shock factor.

My family loves all kinds of animals and nature, so much so that we joined the Wildlife Nature Conservancy. Through them, we now have memberships to The Central Park Zoo in NYC/Manhattan, The Prospect Park Zoo in Brooklyn, The Bronx Zoo in The Bronx, The Queens Zoo in, you guessed it, Queens, and The NY Aquarium in Coney Island. We frequent these locales whenever we have a couple of hours to kill and always come home with fun, new knowledge. But, it was our trip to Hershey Park's ZooAmerica in Pennsylvania where we all learned a most amazing and amusing fact.

My husband, Olivia, Brian & Michael and I were leisurely strolling thorough the small zoo of native North American wild animals -- a different and interesting arrangement of zoo inhabitants -- one sunny Saturday in early October. As we meandered up the wooded path, flanked on either side by animal pens and habitats, I overheard some native Pennsylvanians airing their displeasure at all the rude people from New York and New Jersey. Though I don't generally admit this in the company of New Yorkers, I do, sometimes, think it... being a New Yorker and frequently finding myself surrounded by such abruptness. Further up the hill, I spied what might have spurred the Pennsylvanians' displeasure. A woman I deemed a typical New Yorker... complete with high-heeled sandals; a bright yellow and white, coordinated ensemble; bejeweled in large golden accessories and screeching in an unnecessarily loud voice, "HEEEERE KITTY KITTY! MEOW! MEOW! HEEEERE KITTY KITTY! MEEOOWW!" Could ONLY be from New York, right? Well, I dare say, I was just as taken aback as the poor mountain lion who paced wildly back-and-forth along the front perimeter of his cage! As we -- the mountain lion and I -- surveyed the situation, I found myself passing judgement (not a good road to happiness, by the way) in my mind. I looked at my husband, about to privately poke fun at this clueless New Yorker who clearly didn't know that the BIG cats ROAR, when that Mountain Lion thought he'd teach me my "learn something new" lesson for the day! He sat down right in front of that gaudy woman and in an abundantly louder voice than hers said, "MEEEEEEEEEEOOOOOWWWW!"

Talk about jaw dropping news! That cat said, "MEOW"! A clearer meow than my own little house cats say on a daily basis. I had NO IDEA that big cats actually say, "MEEEOOWW". I was waiting for that big mountain lion cat to roar the golden hoops right out of that lady's ears. But, what did I hear instead? MEOW! MEEOWWW? Holy mackerel, I almost doubled over in laughter. And, apparently, the security guard standing nearby must have been reading my mind, or at least my facial expressions, because he started laughing too. I explained MY stupidity to him and we both had a good laugh. Then, I ran to get my kids and make sure they heard the BIG CAT say, "MEEEOOWWW" so they would never find themselves as ignorant as their silly, New Yorker Mom. It's been months since that day and every time I think about it, I laugh out loud. I LOVE fun new knowledge! Now, however, I frequently find myself wondering whether a lion roars or says, "MEOW"!

Monday, November 24, 2008

Embracing Our Differences

I belong to a message group of mothers of multiples where one or more has Down syndrome. That's a relatively small group as you can imagine. And, as much as we all have in common, there are distinct differences amongst us and how we handle the details of our lives. In another small support group I belong to, the common thread is that we all have a child with "special needs" attending a particular school. In both groups recently, there's been discussion about medications, nutritional supplements and/or special diets, and various other treatments for our children's afflictions. Please note, not all of the children I'm referring to have Down syndrome. That's not really the point I'm trying to make here...

I don't intend to discuss any of these methods, nor to support or detract from any of these methods, nor to condone "treatment" versus "non-treatment" for our children's afflictions. MY POINT IS that we are all different. Each of us has the freedom to choose. And each has the choice to do or not do what they believe is right for their child.

In both groups, the discussions were absolutely intelligent, well-thought out and considerate and accepting of alternative points of view. My hats off to all of these parents, from all over the country, from all walks of life, having an educational and civil discussion of such intimate matters. You are all a shining example of how and why our children will be accepted into this society if not now, then, I tend to believe, sooner than later! Our ability to see, understand and accept the differences between our own opinions will surely help others understand and accept the differences in our children. As much as we are all different... we are more the same!

Thank you all for being so accepting. It bodes well for our children.

Friday, November 21, 2008

Thankful Thursdays

Here I am again, specifically thinking about what I'm thankful for on Thankful Thursday... and feeling good about all my choices. That IS what this is all about isn't it? Feeling good! So, contemplating the good things in my life really does keep me Walking on the Happy Side.

[1] I'm thankful for the brain God gave me and for the 20-year career I've had in database/direct marketing. My ability to learn and the knowledge I already have makes me feel good about myself. And, some things are better at reminding me that I'm an intelligent being... like the internet marketing seminar I attended yesterday. And, I bet I'll feel even more thankful when I put the information I learned yesterday into action ; )

[2] I'm thankful for the heat in my home. Nothing reminds me more of this than waking up before the morning heat has kicked in, suddenly realizing how very cold it would be in my home if I didn't have heat. So, thank God for the boiler, for the earth's natural gas and for my husband's job so we can pay for that gas.

[3] I'm always thankful for my children... but I'd like to shout that out again... THANK GOD FOR MY BEAUTIFUL CHILDREN! We spoke as a family in one of the local college classes this week (as we do every semester at 4 local colleges) advocating individuality and acceptance on behalf of people with Down syndrome and other special needs. And, once again, my children were absolute angels and outstanding ambassadors for all people with Down syndrome. I'm sure that the 30+ students who met Brian, Michael and Olivia will never forget them or the experience.

[4] I'm thankful to be able to lay down at night on a soft bed, in a warm room and sleep. God knows not everyone in this world, country or town has that luxury... Our military forces abroad, people living in poverty all over the world, new mothers tending to sleepless babies and so many more. I want to acknowledge how much I appreciate it and hope that those who are less fortunate are afforded this comfort soon.

[5] I'm thankful to be able to write this blog and have people who care enough about me or what I have to say to read it. It is an outlet for me and one I'm very lucky to have. It's my physical reminder to Take a Walk on The Happy Side!

Wednesday, November 19, 2008

Avoiding or Accepting Unhappy Situations

Happy thoughts and activities do help to keep me happy. Likewise, avoiding unhappy thoughts and activities, are a pretty effective way to boost my happiness quotient too.

These days I log 60+ miles a day driving Olivia and the boys to and from school. For me, that's a lot more miles than the 10,000/year I've been used to for the last 7 years. Now, don't get me wrong, I actually love to drive. Heck, my husband and I made 6 round trips between KCMO and NY in 2 1/2 years when we lived there. For me, driving usually means good music, think-time, pretty scenery, and, if I'm not alone, good conversation. When the boys are in the car for the 30-45 minute commute, I have a captive audience to practice their talking, pronoun concepts and answering W-questions. (If you have a 3-year-old with special needs, you can probably appreciate that.) However, one thing I've noticed encroaching on my happiness is the pressure to arrive at school at a particular time. Don't get me wrong, I totally believe in getting my kids to school on time.... but it's that deadline that creates the need to rush. And, it's the need to rush and the actual rushing that makes me a pretty unhappy camper... or commuter.

Getting 3 slow-moving, need-help kind of kids to wake up and get ready for school each morning is no small task. I generally wake up a bit early, shower, dress, pick their clothes out and start the lunch/snack process so I can be more focused on them when they awaken. Sometimes this back fires when they wake up early with me and demand my attention... OR, when they wake up late because I'm not there. Either way, everyday, the last 10 minutes is a wild push -- complete with running, yelling, and, unfortunately, sometimes tears -- toward the exit door as if the house is on fire.... and I'm always going back multiple times for some forgotten but necessary item... like my eyeglasses, the boys' juice cups or the car keys.

To add pressure, on Long Island, the commute is king! If we leave our home at 7:59 am, we'll probably make it to school on time -- assuming no accidents or road construction -- because everyone else leaves at 8:00 am. But, if I leave at 8:05 am I'm positively screwed (excuse my language), backed up in traffic and stuck at multiple traffic light cycles the whole way. That 6 minute difference in departure causes a 20+ minute delay in arrival. There's no getting around it. Every alternate route is just as backed up as our favorite route -- I've tried everything -- and I just have to sit patiently behind the wheel and wait... like everyone else. But, God help the guy in front of me who lets the garbage truck get in front of him to further delay ME! Or, curse the crew of landscapers blocking the right lane of traffic to pick up leaves for the Jones' or Smiths. Where do they get off doing this at rush hour? RUSH HOUR! My nephews have dubbed their mother's similar reaction -- she's doing a similar commute -- as "Marshall Law". (Marshall being our maiden names.) That is, I am so much more excitable and reactionary and outright verbal when I'm rushing like a mad-woman and missing my deadline anyway! Don't worry, I fall short of road rage but I sure do understand it. Folks driving willy nilly, irresponsibly cutting each other off just to get to their respective destinations a minute sooner. It does sound crazy. And, I absolutely drive safely with my precious cargo! But, if I'm going to be honest with you all, I must say there are times when I sound more like a truck driver than a Mom.... sadly. And all that yelling makes me feel bad about myself and doesn't make the boys happy either. I apologize to them and they blow me kisses (as though I've been hurt).

Yesterday, a young girl refused to yield to my signal and lane change, specifically speeding up and swerving into oncoming traffic JUST to make sure I didn't get ahead of her. Mind you, there were 2 police cars with lights and sirens at a dead stop in my lane and I had more than enough room to maneuver safely into her lane as long as she didn't speed her pace... which she did. She just didn't want me to get ahead of her! As it happens she was going my way almost all the way home and so I steadily followed behind her as I made my way home. I could see her glancing in the rear view mirror nervously, as though I was following her, which, while I was behind her I wasn't technically following her I was just going home. Each time I caught her eye, I smiled and waved... Enjoying her discomfort. But, by the time we got closer to home I had managed to talk myself down from my anger and wrote her off as just another terrible and selfish Long Island driver (I meet a lot of them these days). When she pulled right to turn where I would continue straight, I did seize the opportunity and rolled down my window, tapped my horn and said, "You should drive more carefully. You could hurt someone with a move like that! Admittedly, I added a name, ONLY in my head, at the end of that sentence. (See, there you were thinking I might be a totally reasonable person.) Still, she specifically stared in the other direction and never looked at me. For the record, when I have made a mistake while driving, I specifically address the driver whose space I breached and apologize, waving the white hand of surrender. Mea culpa!

Back to my happiness... I was proud that I'd quickly talked myself down from the incident, and noted that, while my calm reprimand was impressive, it didn't actually help me feel happier... though I did get a giggle out of waving to her during the rest of the drive. I also recognize that having to rush makes me angry. I've tried before to get the kids to bed a half an hour earlier so that I can wake them earlier but that doesn't work for them or me, honestly. Evenings are our together time as a family and I don't really want to cut it short or rush around before bed. But, perhaps I could try 10-minutes earlier and see if that helps. Either way, I've discovered that my happiness hinges on my acceptance! Acknowledging that the last 10 minutes of every morning are going to be crazy and as much preparation as possible to smooth that transition from house to car and car to school is necessary. And, acceptance that I have no control over the traffic situation means leaving myself a reasonable amount of time to commute which may still result in our late arrival. It's out of my control at that point. I'll just have to fore go the mother's guilt and work a little harder on this last piece of acceptance (so will the boys' teacher). But, I do believe my happiness and my children's happiness are worth it!

Monday, November 17, 2008

Quick Off-Schedule Angels Amongst Us

I think I've mentioned how happy my pets make me, right? http://walkonthehappyside.blogspot.com/2008/11/pets-pets-and-more-pets.html
So, now we're sort of officially in the market for a new dog for Csiba, our 12 1/2-year-old Chow Chow. Since we lost Isaiah, our 12 1/2-year-old lab/boxer mix to cancer in September, Csiba has been down dooby dooby do down down. It's not terribly surprising that she's so sad since they were raised together from pups and, being nearly deaf, she lost her ears when we lost Isaiah. So, here I am on-line, cruising http://petfinder.com/ for local dog rescue organizations in search of a good-with-kids/cats/dogs, kind, calm and quiet, BIG dog that will fit nicely into our 5-person, 1-dog, 2-cat and 3-fish family. I know, we're expecting a lot....

Here's the amazing thing about this process... We've run into so many inspirational and caring angels out there working/volunteering their time to save the hundreds of adoptable dogs and cats that are abandoned daily by their owners for various -- some bogus, some not -- reasons. But, there's one person -- an Angel Amongst Us -- that I'd particularly like to mention, Lori of http://acq.petfinder.com/, who dedicates so much of her life -- as well as some of her husband's and son's lives too -- in pursuit of the best dog and cat owners for her many homeless, 4-legged charges. God bless Lori and the people like her who work tirelessly to save the innocent animals our society deems disposable.

So yesterday we asked to adopt a new-comer to their shelter, a very-pregnant, abandoned Boxer -- as well as fostering and then helping to adopt out her puppies when they're ready for forever homes of their own.... We might even consider fostering another one of their dogs just because she's a wonderful black-lab mix who needs a home and doesn't deserve to live in a cage!

So, if you happen to live in/near the metro NYC area and you're inclined to adopt a pet, or if you have the heart and space to foster a pet, or if you have the time to volunteer to walk a few homeless dogs in the afternoon, or donate a dollar or two, please give Lori a call at (718) 424-3340. If you're not nearby, go to http://petfinder.com/ to view the needy animals and rescue organizations that need support in your local area.

Sunday, November 16, 2008

Motivating the Low Muscle Tone (Or Any) Child

Often, a child with Down syndrome exhibits varying degrees of low muscle tone. Please note that muscle tone is different from muscle strength. Muscle tone refers to the resting state of the muscle. And, low muscle tone means, when not in use, the muscle is more relaxed than a high-tone muscle. This also means it takes more effort to get that muscle moving and to keep it moving. This is one of the laws of physics in action: an object in motion tends to stay in motion and an object at rest tends to stay at rest, unless a force acts against it (or something close to that). Note: I've described low muscle tone in analogous terms in a previous post if you want to read more about it: http://walkonthehappyside.blogspot.com/2008/10/down-syndrome-obesity-it-may-not-be.html.

The behavioral impact of low muscle tone on a child also varies depending upon the degree of low muscle tone and their personal motivation. I've heard folks with and without children with Down syndrome describe them as lethargic, couch potatoes, or worse, lazy and unmotivated. I can tell you, as a person in the low range of normal muscle tone who used to "run" on a daily basis, none of these hit the nail on the head. The truth is, it was just harder for me to run than it is for many others (like my high muscle tone husband). I loved to run mentally but I struggled every step of the way physically, frequently talking out loud to myself, "pick up your right foot. Put it down. Pick up your left foot. Put it down...". My heart and head were in it but my body... not so much. This being the case, I find the last of these unfortunate descriptions -- unmotivated -- is totally off the mark! As a matter of fact, it's opposite -- motivation -- is actually the key to my and my children's activity level and progress.

My little guys, 3 1/2 year old identical twins with Down syndrome, have muscle tone in the low normal range and are borderline delayed in their gross motor skills. As such, they receive Physical Therapy 2 times per week during their school day. I recently took part in my sons' therapy sessions -- taking advantage of their schools' "open door" policy. BTW - Most schools that offer special education services have this policy and I highly recommend taking advantage of it so that you can feel comfortable (or otherwise) that your children are getting the best and most appropriate education and services for their needs. That said, unfortunately, I found that the boys' Physical Therapy sessions were not as productive as I'd hoped... Potentially explaining, at least in part, the regression in gross motor skills I've noticed since September when they transitioned to this school and their new therapist. But, rather than bemoan what I did not observe in these sessions, I'd rather focus on what I happily did observe during the boys' Occupational and Speech Therapy sessions. These therapists were VERY effective in motivating my guys to do what they wanted them to do thereby practicing and improving their related skills. I was wildly pleased with the way the OT and Speech therapist worked with my boys each in their own personal way.

Here are some of the critical elements I observed in motivating my special needs children:

  • The therapists each worked side-by-side or hand-over-hand with the boys (as appropriate)... providing just enough support but NOT performing the task for them.
  • They demonstrated unfamiliar and familiar tasks alike, prior to each activity to ensure proper form and performance.
  • I LOVE that they continuously praised my guys not only for succeeding but for trying too!
  • Like cheerleaders cheering for their teammates throughout the game (not just at the end), the boys received constant encouragement during each step of a multi-step task!
  • And, their praise and encouragement came in a form that my boys like best... crazy loud whoops and high-5s... Which my guys LOVE!

This is EXACTLY what MOTIVATES MY children to get up and move... despite their low muscle tone!

So, here's the pitch...

For parents/caretakers: First, know what motivates your child. Then, take advantage of your right to participate/observe their therapy sessions so you can determine what is and isn't working. After identifying the gaps, use your personal knowledge of what motivates your child to better assist your therapists in optimizing their limited time with your children. Finally, make sure you carry through at home. One of the most memorable and important things a therapist told me was, "The 30 minutes I spend with your child on any given day will not make much of a dent in their development. It's what you do with them -- carrying through on the exercises we do -- that will help them the most."

For Therapists: Please let us parents help. Invite your clients' parents to come in and participate (not just to observe though that's better than nothing!) Engage the parents to find out what motivates their child. And, then, just like being a parent, do your best to follow through. Take a vested interest in the outcome.... it pays a fortune in gratitude and achievements!

Thursday, November 13, 2008

Thankful Thursdays

Recognizing the blessings I have in my life makes me focus on the positive things I have going on... and that keeps me walking on "The Happy Side".

[1] First, I must give credit where credit is due: I picked up 'Thankful Thursdays' from my blogging friend, Heidi, who picked it up from her friend and so on and so on. I'm thankful that Heidi introduced me to Thankful Thursdays so I can purposefully remember the things I'm thankful for!

[2] I'm thankful that my family and I have health insurance and that my father has medicare so that we were all able to get our flu shots this year. With young, school-age children, the shot is pretty critical in avoiding the otherwise inevitable week+ in bed feeling miserable this flu season. And, for my elderly Dad, this shot can be a real life-saver... literally!

[3] I'm thankful for the beautiful pets I have -- all rescues -- and for the people who make it possible to adopt such wonderful animals. As I go through the process of [maybe] looking for another dog-in-need that might fit happily into our family, I'm saddened at the number of homeless pets there are. But, I'm massively impressed with the quality people who choose to dedicate their lives to help carefully re-home these desperate and deserving animals.

[4] I'm thankful that I have a good relationship with my daughter. When something bothers her, she never fails to discuss it openly with me so that we can come up with some ideas together to help resolve her issue. I'm sad that she occasionally encounters problems but I'm happy that she's learning to communicate and talk things out... and that she trusts me.

[5] I'm thankful for my half-finished mess of a 200-year-old, bayman's cottage with all it's inherent problems. I know I'm lucky to have a roof over my head while so many others are having trouble keeping theirs.

In honor of Thankful Thursdays, take a moment to think about the things that make you feel thankful today!

Wednesday, November 12, 2008


Last Saturday morning I packed the kids into the mini-van for our bi-annual trek to one of our local colleges... to speak on behalf of people with Down syndrome. We do this at 4 local colleges in various areas of education -- Speech/Language, Psychology/Psychology for Exceptional Children and Education/Special Education -- for 2 primary reasons: [1] to allow students who aspire to work with children with special needs to meet face-to-face my extraordinary boys, Brian & Michael, who happen to have Down syndrome, so that they may put a human face on what is more-than-likely an out-dated, text-book impression of this diagnosis; AND [2] Our more self-serving goal... to help clear a peaceful life-path for Brian & Michael. The more people that meet them and come to understand and experience, first-hand, the breadth of possibilities for people with Down syndrome, the greater their acceptance and opportunities will be in life. (Pic: Ellen and Olivia on the last day of summer)

That said, on what we hoped would be an informative expedition for others, we were exposed, ourselves, to a few Angels Living Amongst Us:

I was impatiently waiting at a traffic light, already late for our speaking engagement and anxiously awaiting my green signal. As the light turned, I was, I admit, a bit disheartened to see that I'd be further detained by a feeble, old man hobbling across the street on his cane -- against the light! I waited with new-found patience, concerned for his safe crossing, as cars swerved around him. He navigated a straight path, oblivious to the cars around him. He reminded me of a scene from Toy Story 2, where Buzz Lightyear and his friends were on their way to rescue Woody. They crossed the highway, blind beneath their construction cones, with trucks and cement tubes rolling perilously close but, luckily missing. I was suddenly brought back to reality when a passerby ran across 3 lanes of moving cars, yelling and waving his arms wildly, bringing traffic to a screeching halt... Much to the chagrin of those who were attempting to drive around the old man, impatient to be on their way. I nodded my appreciation and the gentleman-turned-traffic-cop-turned-Angel told me that the old man was blind. Though this stranger's faith in mankind might have been diminished that day, mine had been restored as he intervened on the old man's behalf. No doubt, an ANGEL AMONGST US!

And, of course, it is only right to recognize the significant and angelic role Ellen, our EI therapist/college professor, plays in creating a peaceful life-path for my sons. Ellen is the one who jump-started my college speaking career. By consistently inviting us back to Nassau Community College to speak on behalf of people with Down syndrome she continuously validates my need to proactively educate people about the human side of the diagnosis. And, in her own rite, she is certainly doing her share to make a difference in the world for people like Brian & Michael. Not only does she help me to spread the word, but she spreads the word herself, working as a family social worker in the Early Intervention program as well as teaching Psychology for Exceptional Children classes where she consistently ensures that her students remain open-minded about what's possible for people with Down syndrome today and in the future. She also brings her more-than-willing husband/college professor into the halo-light by giving him the opportunity to have us speak with his students as well. The more people we touch and teach, the better! And, they make a wonderful team of angels! My deepest appreciation and my children's heart-felt thanks go out to both of these angels...(http://commtechlab.msu.edu/Sites/aslweb/browser.htm)

Knowing there are caring and proactive people who take the time to do the right thing for others in this fast-paced and frequently selfish world is a breath of fresh and heavenly air for me. There are angels all around us, if we only pay attention. Thanks to the powers that be -- God, for me -- for helping me to recognize these people for what they are... Angels Amongst Us!